Antonio's patches: Boy needed open heart surgery at 6 months old

A picture Rachelle and Dan Otero hope to forget. Rachelle said seeing son Antonio with all those wires and tubes is something no parent should ever have to see. This picture was taken the night of Antonio's surgery. (Courtesy)

THE FIRST SIX months of a newborn's life should be a happy time for everyone involved.

For Rachelle and Dan Otero, that time was wrought with the unknown.

Rachelle Otero, of Manchester, gave birth to Antonio on June 4, 2013, at Elliot Hospital in Manchester. He was 7 pounds, 6 ounces. She called him their “little miracle baby.”

“Having a family was something I always dreamed about,” Otero said.

Soon after Antonio was born, the doctors heard a loud sound in the baby's heartbeat that they at first thought was a murmur. Otero said the heartbeat sounded like a “freight train” to their pediatrician. An echocardiogram was immediately ordered and the on-call pediatric cardiologist was called.

What they were told would be a half-hour test took an hour and a half, and that's when Otero knew something was wrong.

Antonio was first diagnosed with Tetralogy of Fallot, which would mean three or more heart problems for Antonio. Further tests revealed Antonio had ventricular septal defect as well as a pinched valve.

According to the American Heart Association, VSD is a congenital heart defect in the ventricular septum, the wall separating the two lower ventricles of the heart. In VSD, some blood that flows through the heart is properly oxygenated; some is not. When they mix, it dilutes the amount of oxygen needed by the body, depriving it of necessary materials.

Some infants with VSD may breathe faster or harder than normal when eating, and have trouble feeding and growing. The cause of VSD is unknown.

Antonio's VSD was undetected throughout the pregnancy, and Otero said that realization was hard as well.

Open heart surgery

“My husband and I were devastated, and luckily we were a support source for one another, as well as many people in the city and our church,” she said.

The doctors at Boston Children's Hospital decided to wait to perform surgery until Antonio gained more weight. Antonio stayed at home until then. The Oteros would stay awake every night, listening to Antonio's breathing, which they said was loud and laboring.

“He kind of had a blue tint to him. It made us very nervous all around, not really knowing exactly what was going on and what we were going to face. We cried every night out of worry,” she said.

They met with surgeon Dr. Sitaram Emani at Boston Children's Hospital, when Antonio was about six months old.

“I said ‘oh my goodness how the heck do you do this?' and he said, 'I have a set of smurf tools,'” Otero recalled.

Antonio had open heart surgery on Dec. 13, 2013.

“It's a day I will never forget. To think of your own child on a heart and lung machine was just beyond scary,” she said.

Otero said surgeons put “patches” of fabric to close two holes in his heart; the third hole eventually closed on its own. Heart tissue forms over the patches.

The surgery was a success, and the family was able to go home right before Christmas 2013.

Special visitors

While Antonio was in the hospital, he and other patients were treated with a special visit from New England Patriots players Rob Gronkowski and Stevan Ridley, and Boston Pops conductor Keith Lockhart.

“So my family, who was so stressed out about Antonio, sees him one day on the Boston news channels, being held by Rob Gronkowski, and people are yelling, 'don't fumble, don't fumble, Gronk!' We have some cute pictures of that,” Otero said.

Antonio the toddler

Antonio, now 2, is a healthy, smart and happy boy with a great personality, his mom said.

“He's such a love. He's happy. He loves to sing, he loves to dance. He loves to entertain.”

Antonio also loves Thomas the Train, Minions, and Elsa and Anna from the Disney movie “Frozen.”

“We really try every day to have him eat healthy, but if you ask him, he'd want to have pizza and french fries every night,” she said with a laugh.

And Antonio is well on his way to becoming a lifelong Pats fan.

“Antonio is a boy who loves to throw his hands in the air and yell 'touchdown' when he watches the Patriots play,” she said.

Being strong for their son

The time leading up to and including Antonio's surgery was difficult for Rachelle and Dan. While they had a lot of support from family and friends, they knew they had to be strong for Antonio, too.

“My husband and I really went above and beyond when he was awake and alert to be extra attentive and really give him our all. And it definitely took a toll on us emotionally and physically. We as parents had to do our best to never let that show or have Antonio feel that from us.”

Otero said they took him on the swan boats in Boston once, when he was about three months old, on one of their myriad trips to the hospital.

“We tried to make every day be the best day that we possibly could have with this little guy, because we didn't know what the future was going to predict.”

Otero is also thankful for her work colleagues and friends who banded together to donate books to Boston Children's Hospital and helped with the Oteros' travel costs. Otero is the assistant principal at Smyth Road School in Manchester.

“To this day I am so grateful for their support, because when you have a brand-new baby, you're not expecting an expense of hotels in Boston and food,” Otero said.

The family continues to give back. Every year, they take part in the American Heart Association Walk, which is around Antonio's birthday. Their team is called “Antonio's Angels.”

Looking good now

The family still visits Boston Children's Hospital and Antonio's local doctor regularly to check Antonio's weight, height and development. He currently has no developmental delays and doesn't need any more surgeries.

“They tell me now that things are looking really great. I'm just so grateful to hear those words. That's what I go by and live by, and I hope that it stays that way,” she said.

“He just overall has such an amazing spirit for a little boy who went through so much and I thank God for that every day.”

To find out more about ventricular septal defect or the American Heart Association, visit www.heart.org.